LBD Brain Health Podcast – The Rich Solution with Gwen Rich & Amprion CEO, Dr. Russ Lebovitz, discuss new options to slow down Lewy Body Dementia.
Full Show Transcript
Speaker 1 (02:12):
(Silence) Missing your mojo, just go to mojo50.com for on-demand podcasts.
Gwen Rich (02:17):
Hello, there and welcome to The Rich Solution on Mojo 5-0 Radio. I’m Gwen Rich, your host, your health advocate and founder of The Rich Solution. Here on Mojo 5-0 Radio, I talk about empowered health and what each one of you can do starting today to not only look but feel and live a healthier, happier, disease-free lifestyle. So today’s topic is Hunting the Monster that Killed Robin Williams.
Gwen Rich (02:54):
All right. Before we get on this important topic and introduce my returning guest, I want to put the disclaimer out there which I do on every show. And that’s because the information on this show is presented for educational purposes only. So it’s not intended as a substitute for the diagnosis, for the treatment or advice of a licensed qualified doctor. The facts presented are offered as information only, not medical advice, and in no way should anyone infer that we are practicing medicine. So always seek the advice of a medical professional for proper application of this material to any specific situation.
Gwen Rich (03:34):
So again, the topic today is Hunting the Monster that Killed Robin Williams. Just a reminder here for the sponsor of the Rich Solution Studio is NOoodle, and that is no, N-O-O-O-D-L-E.com, nooodle.com. Use #SPOONY, all caps S-P-O-O-N-Y, to get your 10% off. And mark your calendar as we’ve got an amazing week starting today with Dr. Lebovitz. Wednesday we’re going to have On Dr. V, Dr. Villanueva. She’s going to talk about how to heal your gut, which will heal your brain. So this goes great with May, which is a mental health awareness month. Friday, we have Dr. Gatza, and everybody loves her. She’s going to talk about the top five ways that sugar makes you sick. That should be a good one because we all consume way too much sugar.
Gwen Rich (04:29):
So yes, it is May and mental health awareness month, which is just one of the reasons I have Dr. Lebovitz back on today, a good reason to continue the conversation on our cognitive health. Today, Dr. Lebovitz will shed some light on a type of dementia that you have probably never heard of, unless of course, you listened to my episode on Parkinson’s and Alzheimer’s with Dr. Lebovitz back on April 30th. It was briefly mentioned, but he certainly planted the seeds for today’s episode.
Gwen Rich (05:03):
Let’s talk about cognitive health. Did you know that cognitive health is the ability to think clearly, learn and remember? Functions such as motor skills, emotional responses, and sensory responses indicate resilience to neuropathological damage. So genetic, environmental and lifestyle factors are all thought to influence cognition and health. So I think that Dr. Lebovitz is going to agree that this is a topic for discussion during mental health awareness. So we’ll ask him shortly.
Gwen Rich (05:39):
Dementia. Dementia is a general term for loss of memory, language, problem-solving, and other thinking abilities that are severe enough to interfere with daily life. And then Alzheimer’s is the most common cause of dementia. In 2020, an estimated 5.8 million Americans aged 65 or older had Alzheimer’s disease. This number is projected, listen to this, to nearly triple to 14 million people by 2060. So Dr. Russell Lebovitz will discuss the early warning signs of Lewy Body Dementia, or short as LBD, and the mysterious brain disease that destroyed one of Hollywood’s most creative minds. It’s often misdiagnosed. Lewy Body Dementia, LBD, is the second most common dementia after Alzheimer’s and afflicts about 1.4 million Americans. It was officially named in 1976. Lewy Body Dementia is triggered when protein deposits called Lewy bodies develop in the nerve cells and the regions of the brain involved in thinking, memory and movement.
Gwen Rich (07:01):
Lewy Body Dementia shares overlapping symptoms of both Alzheimer’s and Parkinson’s. So this system crossover makes LBD extremely challenging to detect, until now, thanks to biomarker testing. Dr. Lebovitz is going to talk to us today about, and enlighten us on the subject of, our cognitive health, especially specifically Lewy Body Dementia. So let me formally introduce my returning guest.
Gwen Rich (07:33):
Dr. Russell Lebovitz, MD, Amprion co-founder, and CEO. He is, again, the CEO of a biotech diagnostics company called Amprion and prior to his management career, Dr. Lebovitz worked as a senior scientist and research physician for over 15 years. He’s also served on the faculty of Baylor College of Medicine in Houston and the Fox Chase Cancer Center in Philadelphia. So we have him here. Welcome. Are you there?
Dr. Russell Lebovitz (08:09):
I’m here. Thanks again for having me.
Gwen Rich (08:11):
Absolutely. Okay. We can hear you. Let me make sure I get you on here. All right. I’m excited to have you back because those who listened to you just a few weeks ago, it certainly sparked a lot of questions. Cognitive health is important to everyone. Am I right to say that we can put… I know we talked, prior to being live, that LBD has its own awareness month, which is in October, which is great, but is this a good topic to put into mental health awareness month?
Dr. Russell Lebovitz (08:45):
Absolutely positively. Lewy Body Dementia as we’ll discuss is multifaceted in the way that it causes deficits: mental health, motor health, as you said, cognitive health, this one hits all the buttons in the wrong way.
Gwen Rich (09:04):
Great. Glad to hear that because at first, I wasn’t sure. I thought if I put that and it really doesn’t fit into mental health, well, I could be starting off on the wrong foot. So not the fact that I’m right, but I’m glad that it’s a good fit and we can talk about that today because I’m sure everybody is very concerned about their cognitive health. Everything from being able to focus intention to memory, and then of course, things like dementia, Alzheimer’s, and now Lewy Body Dementia. Why don’t you do this, give us a little idea? You were on a couple of weeks ago and like I said, I always want my listeners to get to know you, they make that connection. You’re obviously very passionate about what you do and the discoveries that you and your company have made, but give us an idea of why you do what you do. Do you have any story that really connects with you and the listeners?
Dr. Russell Lebovitz (09:58):
Sure. Like so many of us, I’ve had close family members who in later stages of life have some sort of mental health issues and cognitive issues, but I’m really interested in this field because I think it’s greatly underserved and yet it represents one of our biggest problems. And if we don’t put a tremendous amount of thought and effort into this, it will get away from us. So I’m completely committed to understanding neurodegenerative diseases and working with anyone, drug companies, diagnostic companies, scientists, patients, to try to find an answer as quickly as possible.
Gwen Rich (10:49):
Right. Very important. I’m also looking live stream, which you can’t see. We have an avid listener, Brenda. It sounds like her dad actually had Lewy Body Dementia and I think he passed before Christmas, just this past Christmas. So I’m sorry about that. So I’m sure she could speak to many of the things that she and her family had to go through. I want to ask you later about maybe things that you’re doing because you said even within your family. We’ve talked before about genetics and Familia and how much that determines or puts you at risk or increases your risk. But let’s talk about that a little bit later. Why don’t we even get into people who are just listening are saying, what the heck is LBD? What is Lewy Body Dementia? What causes it and who can get it?
Dr. Russell Lebovitz (11:41):
Sure. Lewy Body Dementia is a really unique form of neurodegenerative disease, and neurodegenerative diseases in general encompass both motor and cognitive mainly. So the main, as you’ve said, the main cognitive source and cause of dementia is Alzheimer’s, but Lewy Body disease is right behind. The major cause of motor neurodegeneration is Parkinson’s, and Lewy Body disease is very much like a hybrid between the two of these in terms of symptoms. Anyone can get it, unfortunately, but it’s really a triple threat. Patients who have Lewy Body disease will have cognitive deficits and signs of dementia. They’ll have motor deficits that we can talk about that are very much like Parkinson’s.
Dr. Russell Lebovitz (12:35):
But the third sort of the triad here that makes it really just very unpleasant for patients and their families is that in Lewy Body Dementia, they’re also, one, patients can have hallucinations. They hear voices, they see things. So it also looks very much like schizophrenia. So in this way, it’s sort of a triple threat and yet it’s caused by misfolded proteins, and we’ll talk about that. We talked about this with Parkinson’s disease, that Parkinson’s and Alzheimer’s are caused by a unique phenomenon that’s associated with neurodegenerative diseases called prion diseases. And in the case of prion diseases, normal proteins in our brain that normally help us function have the potential and on rare occasions will flip and transform.
Dr. Russell Lebovitz (13:33):
We’ve talked about this before, just like Transformers in the movie or the children’s television show, it’s the same structure, but it flips now to something that has a different function. So whether it goes from a robot to a truck, in this case it flips from a normal helpful functioning protein into a dangerous one that damages cells and actually recruits other forms of the protein. So it replicates and it damages. And in the case of Lewy Body Dementia, the protein, the prion protein, the transformer protein is called alpha-synuclein. And if you remember from our last conversation, this is exactly the protein that’s involved in Parkinson’s.
Dr. Russell Lebovitz (14:21):
In Parkinson’s, one sees in certain regions of the brain after death when one looks things called Lewy bodies, and those are misfolded prion-like forms of synuclein. It turns out that in this disease that we’re calling Lewy Body Dementia that was discovered much later than Parkinson’s, Lewy bodies are also present. Misfolded prion-likes synuclein is rampantly growing in the brain, but it’s in slightly different regions. And the symptoms, even though the cause is the same between Parkinson’s and Lewy Body Dementia, it looks like the Lewy bodies of Parkinson’s in the regions of the brain where one would normally see Alzheimer’s. So if that makes sense, the region of the brain that is affected, determines the symptoms, but the mechanism here and what we would want to treat is the prion-like form of synuclein. So hopefully there’s some context here, but please ask if that wasn’t clear.
Gwen Rich (15:26):
No, that was very, very clear. And I want to later on ask about, because I know I’m going to forget, because we’re talking about Lewy Body Dementia and the similarities that it has with Parkinson’s and Alzheimer’s, the question that sparks in my head is, when they’re looking for a treatment, could a treatment actually cure or work with all three or do they have to be very specific with each disease?
Dr. Russell Lebovitz (15:55):
Well, if the treatment is about attacking the transformer form of synuclein, the prion form of synuclein, then one treatment ought to work if given at the right time, certainly for Parkinson’s and Lewy body disease, which are almost exclusively or primarily what we’ll call synucleinopathies. They are due to misfolded prion-like synuclein. The classic form of Alzheimer’s involves two other proteins that you may hear about a lot, a beta-amyloid and tau. And so there, one would need a similar treatment, but one directed at either abeta or tau or both. But the story gets much more complicated in that what we used to call Alzheimer’s is not necessarily a pure disease.
Dr. Russell Lebovitz (16:51):
Now we know that 50% of people with Alzheimer’s, diagnosed as Alzheimer’s not Lewy Body Dementia or other forms, at autopsy they have Lewy bodies in their brain. So this synucleinopathy is very promiscuous. It can occur in the context by itself of Parkinson’s, it can occur by itself with Lewy Body Dementia, or it can occur secondarily and probably contribute to a lot of the symptoms of late-stage Alzheimer’s. So it’s a bad actor but we need to understand it and that’s what we’re working on.
Gwen Rich (17:32):
Right. Oh, you definitely are working on that and getting the word out. I mean, it’s just, it’s blowing my mind just hearing you talk about the similarities. I mean, we know how bad any one of these three diseases are. So, very complex. I mean, you’re simplifying it, but it’s a lot. Let’s do this, I’m going to talk about the sponsor just very quickly, why don’t when you come back talk about maybe some of the warning signs of LBD and the stages, because last time you were on, you talked wonderfully about the different symptoms that someone might experience and it really helped people to understand like, wow, okay. So I want you to do that when we come back. Okay?
Dr. Russell Lebovitz (18:20):
Yes. Thank you.
Gwen Rich (18:21):
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Gwen Rich (19:10):
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Gwen Rich (20:01):
All right. We are here today with returning guest, Dr. Russell Lebovitz, on a really important topic, and that is cognitive health. It is mental health awareness month, and this fits in great with what we want to talk about today because mental health, cognitive health, affects everyone. Whether it’s you personally or a loved one, family member, it seems to touch everybody. So we are talking specifically about LBD, Lewy Body Dementia, which most people have never heard of. I know from the last time Dr. Lebovitz was on, I talked to a lot of people and they’d never heard of it. So this is a great way to get the word out and we just have to continue the conversation. And then everybody makes a mental note, October. October is Lewy Body Dementia awareness month. So we will have Dr. Lebovitz back on then. I want him to talk about some of the warning signs, some of the stages because you did a great job clarifying what you talked about Parkinson’s and Alzheimer’s.
Dr. Russell Lebovitz (21:08):
Sure. First, thanks for giving me the opportunity to share some of these insights and knowledge, which have been accumulated by many doctors and patients over a number of years. So we talked before about signs for Parkinson’s and let’s just review those for a second. That Parkinson’s is primarily a disease, it’s considered a movement disorder. So it’s a disconnect from the parts of our brain that have told us our whole lives how to move and that we now do with great facility complex movements like walking or sports or other things. Suddenly when Parkinson’s hits, those connections don’t work anymore. Things like our handwriting, the way we move with facility don’t work anymore. And we talked before about some of the unique signs of Parkinson’s, and the reason I’ll go through some of these again is they’re the same signs as for Lewy Body Dementia on the movement side.
Dr. Russell Lebovitz (22:11):
So remembering that Lewy Body Dementia is really a combination of signs one would see in Alzheimer’s plus signs one would see in Parkinson’s, plus unfortunately the added dementia of neurobehavioral, of hearing voices, of seeing hallucinations that are visual and auditory. All of these in combination are full-blown Lewy body disease. But any one of these can be an early sign of Lewy Body Dementia. But the problem is if it looks like Parkinson’s, then one will consider it to be Parkinson’s and potentially miss some of the other signs. If it starts with something that looks like Alzheimer’s, then it’ll be considered to be Alzheimer’s, and people won’t be looking for the movement. And then third, if it starts with hallucinations, it might easily end up with a neuropsychiatrist looking for symptoms that might be related to schizophrenia and also miss the cognitive and the motor.
Dr. Russell Lebovitz (23:25):
We can go through these. The cognitive Alzheimer’s like symptoms, you’ve already described. It’s a loss of executive function. It’s loss of memory in a way that interferes with normal function. So one, it’s often people can tell you where they are but not how to get where they are from a block or two away. So that’s the executive function, sort of planning and context. For the Parkinson’s-like symptoms, it has to do with muscle rigidity, inability to move with fluidity. A shuffling walk can lead to, as we’ve talked about before, certain sleep disorders that lead to thrashing and movement and kicking. And so that is an early sign of Parkinson’s. It would also be seen in patients with Lewy Body Dementia.
Dr. Russell Lebovitz (24:20):
And then we would add the sudden onset in someone of an age that is consistent with Alzheimer’s or Parkinson’s or Lewy Body Dementia of hearing voices. So it is really the combination of any one or more of those that would lead a doctor to suspect Lewy Body Dementia. But again, every patient at the earliest stages usually presents with one thing. And so it can be months or years to get to an actual diagnosis. And as you mentioned in the story from Robin Williams family, he was believed to have Parkinson’s because as an actor, the motor, the voice changes that were very subtle were what were recognized. However, as it progressed, there were hallucinations, there were other signs, but they didn’t put it together. Even for someone who has the resources to have the best care possible and presumably had the best care possible, it is complicated and this really wasn’t understood until after he died when Lewy Body Dementia was diagnosed.
Gwen Rich (25:31):
Right. Oh my gosh. Oh my gosh, I don’t even know where to start because I’m getting responses live, the feed, how this is a scary thing, and it is. Anybody who has in their family someone who has dementia, Alzheimer’s, Parkinson’s and now LBD, it is very scary. Am I understanding, is there any one symptom that we know of that is exclusive to LBD?
Dr. Russell Lebovitz (26:01):
No, it really is the combination. The hallucinations in the context of either Parkinson’s or Alzheimer’s will shift the suspicion to LBD. The hallucinations can happen in Alzheimer’s, but usually late. In Lewy Body Dementia, the hallucinations can come much earlier. They may be the first sign. But there’s no single sign. It is really a combination. And so you have to be looking for that combination because usually you start with one symptom. And so it’s important for the doctor, the family, the patient themselves, to be aware of other things going on that might not be mentioned because of the predominant symptom that first appears.
Gwen Rich (26:53):
Right. Okay. Let me ask you this. I’ve been concerned with cognitive health, I mean, at least in my teens, because I have Alzheimer’s on both sides of my family, my father and my mother. And so I’ve just thought, okay, I want to do whatever I can to help reduce my risk. As I mentioned at the last show, I have the ApoA4 gene. It’s only one allele, so that’s good. I understand it doesn’t mean I’m going to get Alzheimer’s, but I know I have increased risk. So I hear you talking about this. I saw my grandfather, my grandmother, and now unfortunately my mother going through… I don’t know for sure my mom if it’s just dementia or Alzheimer’s, but they get childlike, how do they even describe that they’re having hallucinations with something like Alzheimer’s, or when they’ve been diagnosed with Alzheimer’s if that’s what we think it is. Does that make sense?
Dr. Russell Lebovitz (27:53):
Sure. But it is as you say, as the diseases progress, it gets more and more difficult to understand whether someone’s having a hallucination or they’re just losing their memory and being confused. These are tricky. So the clinical signs of these diseases just require a lot of listening, a lot of experts trying to test, but it is a very, very big challenge to understand all of the symptoms in someone who has major deficits already. What we have to do is just keep testing, asking and listening. But again, Lewy Body Dementia, one thing that really distinguishes it from Alzheimer’s, if that is what we’re worried about in a given case, are the motor symptoms on top of the dementia. So it’s really that combination. Most people with Alzheimer’s really have memory problems, not movement problems.
Dr. Russell Lebovitz (29:03):
So suddenly seeing any sign that we’ve described that’s linked to Parkinson’s or a movement disorder, at the same time one clearly is seeing cognitive decline in the presence or absence of the hallucinations we’ve discussed. So I’d say the best signs are some combination of a motor problem, changes in signature, changes in walking, the sleep disorders, plus a very clear decline in memory and cognitive function. That combination should trigger for everyone this doesn’t look like typical Alzheimer’s, particularly at the early stages.
Gwen Rich (29:46):
Right. Just on a personal level, I’m thinking about this. You’ve even mentioned that a lot of people have been diagnosed with Alzheimer’s and then of course passed and they did the autopsy and they actually had LBD, these proteins. Okay, so someone, myself, I walked away even last time you were on the show thinking, “Oh, okay, I know I’ve got a higher risk of getting Alzheimer’s. Should I be tested to see if it’s something else besides Alzheimer’s.” What’s your response to that?
Dr. Russell Lebovitz (30:22):
Well, you already know your ApoE4 status, which is important. And as you said, with one allele, there’s an increased risk. But most people with an ApoE4 allele do not get Alzheimer’s. Sorry you’re looking if that is surprising. There’s an increased risk, but the positive there is that there’s still, most people who have that allele don’t get the disease if you look at the numbers overall. That is not a cause, it is not a predestined fate, but it is a risk factor. As you know from the things that you do very well, that for neurodegenerative diseases, there is data that suggests that the same things, eating a healthy diet, regular exercise, they are things that one can do to slow down the progression of any of these diseases.
Dr. Russell Lebovitz (31:29):
And so, I mean, if the question is when is it right to be tested, it’s right to be tested when there is a concern that one might be able, if one knows which disease it is or that there is actually a Parkinson’s or LBD versus Alzheimer’s, we’ve talked about this before. One can change lifestyle, can enter into a clinical trial, can look for other things, but one of the most important things about a clear diagnosis, and I’ve spoken with so many patients and their families on the LBD path, is that the uncertainty, not knowing what’s going on and just year after year of symptoms that can’t be explained that they feel that once they know what’s happening and can at least take charge of the known rather than the unknown, that that is very, very important. You don’t have to keep having visits and have an unknown diagnosis.
Dr. Russell Lebovitz (32:40):
So in the beginning, just having certainty saves a great deal of anxiety. It also saves many visits. It saves costs in the long run. But also it then allows someone to say, or their family, “All right, this is where we are. What options do we have now to slow this down?” And hopefully, and as we’ve talked about before, in the next decade, I hope we’ll be able to say that we have options that lead to a cure or the ability to stop this dead in its tracks. But right now we would be thinking of slowing down the progression. If we can slow it down, the earlier we start slowing, the greater the benefit of slowing down. And we might get 10 or 15 extra years without significant symptoms or being incapacitated by starting early. So the advantages of knowing are, one, you get an early start. Two, you get certainty about what’s happening to you and your family member. And then the third is what we’ve talked about before, that early detection empowers early prevention.
Gwen Rich (33:54):
Right. I remember that. In fact, I was just going to say that and then go… I mean, we’re going to take a break here, but then go into, because early detection empowers early prevention, which is so important, I want you to actually talk about this test. And then I want you to get, well, I’ll ask some questions about some of the things people can do. Let me just talk about what the Rich Solution’s going to do for a minute here and come back. And then I want you to talk about this significant test, which is so important because again, it’s early prevention and it just empowers so many people.
Gwen Rich (34:29):
All right. The Rich Solution, 2021. Things are getting better here with the pandemic, but people are still suffering. We have people who are so stressed out, have so much anxiety. So what we’re going to do, if you’re familiar with The Rich Solution, go to richsolution.com, you can see what my philosophy is with supplementation. We have put kits together. And that was really because we heard you. We had so many people emailing us and on livestreaming said, “Okay, I need to start. I don’t know what to do.” So we put kits together. If you purchase any one of our kits, they’re drastically reduced in the price, there’s no shipping,
Gwen Rich (35:04):
and now we’re going to add two complimentary supplements. So one is the Rich Adapt. So this is an adaptagen. It’s all natural, comes from a plant, a tree. And then there’s resveratrol, which most people have heard of or familiar with. It comes a lot from a grape. And that’s an antioxidant. So both are very good. We’ve got two months supply, $120 value. This is complimentary to you if you go to therichsolution.com, purchase a kit. You don’t need any code. We’ll send you an email thanking you of course. And then I’m letting you know when your complimentary supplements are going to arrive. So check that out. Supplies last. That’d be something that you could start to do today.
Gwen Rich (35:48):
Okay. Today’s a really, I think every episode is always really good, but I love when I have a guest on because we have an expert, we have a doctor, MD, PhD, who has years of experience on this topic and is shedding the light very well on cognitive health, on Parkinson’s, Alzheimer’s and now Lewy Body Dementia, LBD. You’ve talked about some of the symptoms, which you made it very clear. Let’s talk about this test because to me, this is huge. I’ve always been about prevention no matter what it is. I have three of four of my kids who are in health care and all the time when we get together, what do they talk about, that everybody’s worst enemy is themselves. They need to work on prevention. This is a great test. Why don’t you enlighten us about this test that you’ve developed?
Dr. Russell Lebovitz (36:43):
Sure. The test was developed by our company, Amprion, in conjunction with a number of really excellent and committed scientists around the world. But what the test does is it uniquely can detect this prion form of synuclein. And as we’ve said, synuclein is a normal protein, we need it. But under certain circumstances, and we can talk about those circumstances in the future, that it can transform into a different shape, just like the Transformers in the children’s television show and the movies, and the new form is not a good form. It is a form that damages our brains. But most importantly, it can spread. So one copy can turn the normal form into the transformed prion form so it spreads from cell to cell, and that’s the way these diseases work.
Dr. Russell Lebovitz (37:45):
The problem is that the normal form and the prion form, almost every test we have had in the past for looking at a protein and its structure, they are so closely related that it is very difficult to detect the misfolded prion form uniquely. What Amprion has developed is a test that ignores the normal form of the protein, of which there’s a million fold more than the misfolded prion-like form, but only to detect the prion-like form.
Dr. Russell Lebovitz (38:20):
And once it is detected, it means that it’s there and we detect it in a form where it is replicating. A positive test means that there is a synucleinopathy, there is this prion form and at least right now, without some sort of intervention, it will progress inexorably, on and on and on. So the ability to detect this, and fortunately these prion-like forms appear relatively early. So it is possible to detect these diseases at a molecular level at very early stages in the disease when the prevention that we’re talking about when the option to enter into a clinical trial, where slowing down the disease just a little bit can buy a decade or more of independence and freedom and normal functioning. So the test itself measures what causes the disease here, and the fact that we can detect it at relatively early stages of the disease is the game-changer.
Gwen Rich (39:35):
Right. Wow. And so is this a blood test? What kind of test is this?
Dr. Russell Lebovitz (39:40):
Yeah. We’re measuring something that’s at very low levels in the brain. So this test, at least in its present form, requires one drop of spinal fluid. It is something that a skilled doctor can do in just a few minutes, but it is measuring what’s going on in the brain. And we can measure it in spinal fluid far, far earlier and more sensitively than we can in blood. We are working on getting the same early detection in blood. That is a goal. But today we can give a very, very clear, helpful answer using one drop of spinal fluid. So, that is what we’re going with.
Gwen Rich (40:27):
Okay. Let me ask you that, is that something where you have to be under a general anesthesia or the Twilight, or how does that work?
Dr. Russell Lebovitz (40:35):
No. A skilled neurologist or other physician who does this, it’s really just a needle put in a place where you can’t do any harm. It’s all local anesthesia. It’s just a few minutes. As I said, our test requires one drop. Therefore this is not particularly invasive. It is done all of the time for any serious neurologic disease. A needle in the same place is used all of the time for pregnant women who are delivering and need an epidural. So we know it’s safe for our most vulnerable populations. But that is what is required to get an absolutely clear answer in this test.
Gwen Rich (41:24):
Right. Oh, that’s so helpful. Let me ask you this. What it makes me think of, and I do this all the time, it kind of goes where my mind is all the time with cancer. So a lot of times with cancer, we can do a biopsy, whether it’s from tissue or bone, but that they will save it. Okay. They might take a few biopsies and they only work on one first, but they’ll save the rest. So is there a possibility to save this drop so that in the future, let’s say you might discover that, hey, we think there might be, I don’t know, mutation or something else going on. Could you go back and look at that person’s drop of blood.
Dr. Russell Lebovitz (42:02):
Absolutely. In fact, it’s such a great question that so much of the data that we were able to obtain to develop this test came from samples that were stored and drawn years and years ago. In some cases, 20 years or more that have been sitting in a freezer just waiting for a test. And what we have found is that whether it’s frozen for two days or it’s frozen for 20 years, the results are exactly the same. So we have been able to study people who went through the process of Lewy Body Dementia or different forms of Alzheimer’s or Parkinson’s over many years, and actually follow their journey where they may have extracted a few drops of spinal fluid every five years so we really understand the progression of the disease.
Dr. Russell Lebovitz (42:58):
And we know in many of these people, because it was taken years in the past, what eventually happened to them. So we can match the results that we obtain with the actual clinical history. So this has been invaluable, and this is why anyone who gets the test, absolutely, it can be stored. As we learn new things, it can be tested in the future. So it is a really great question.
Gwen Rich (43:26):
Wow. I mean, I’m fascinated by that, the fact that that gives you so much information in how you could study the stages and the symptoms that a patient has. And then of course bring that to light to all of us like you are today. That blows my mind. Very cool. When we go back to Robin Williams, and again, like I said before, I hate to go to someone who’s a celebrity just for that fact, but he is going to bring awareness, he is bringing awareness with LBD. He did not have the test, correct? He could have had this test but he didn’t.
Dr. Russell Lebovitz (44:05):
Correct. The test was not available at the time. So in his case, the diagnosis was made really after he passed away. The doctors chose and his family chose to look at his brain because until our tests, the only clear test that’s definitive for LBD is actually to look at the brain. That is true for most of the other neurodegenerative diseases as well to really understand what’s going on. As we get new tests that allow us to see during life, and particularly at early stages of disease, we have a window we can change for the better the whole process, but it was not available to Robin Williams.
Gwen Rich (44:58):
Wow. Do you know specifically any of the symptoms he was exhibiting?
Dr. Russell Lebovitz (45:05):
Well, only from what his family has released and in the public domain, but I believe that it was. It was originally diagnosed as Parkinson’s. So I think it was largely movement disorders, but I believe there were hallucinations and in the end, it was combined with a cognitive decline as well. But I believe the first symptoms that were noticed were Parkinson’s-like, and that is very, very common. So many people in the first few years have a diagnosis of Parkinson’s. And the important thing here is to look and to make sure that there aren’t other symptoms that aren’t being mentioned, because it’s the combination of understanding what’s going on at a molecular and cellular level plus understanding what’s going on at the clinical level.
Dr. Russell Lebovitz (46:03):
And again, the molecular and cellular level tell you what’s causing the disease and spreading, but the clinical level tells you where in the brain it has reached and what is being damaged. And it’s really that holistic picture that helps us understand what’s going on and we need to make these diagnoses and treatments personalized because there’s a different combination to a certain extent for every single individual.
Gwen Rich (46:32):
Right. Okay. Let me ask you this. Is it my understanding, so let’s say someone’s exhibiting, I don’t know, X, Y, Z. They’ve gotten the test and the test is saying that they don’t have LBD. Can I assume that with anyone who could be concerned with cognitive health and these diseases that basically the lifestyle choices is what’s going to help them either reduce the risks or slow things down so it doesn’t even matter when you’re diagnosed or which one you’re diagnosed?
Dr. Russell Lebovitz (47:09):
Well, yes, to a certain extent, but then there’s the third possibility. You can have a diagnosis of LBD. You can have a diagnosis of Alzheimer’s, or it’s possible that the early symptoms are just old age that happens to all of us. And what you can predict from these tests is whether it will progress to a point of incapacitation. And so yes, if you know, a positive test tells you that you’re on a certain path. There are certain choices that can be made. For people who have a negative test, they have symptoms but the probability then that they are on a progressive path of Lewy Body Dementia then are very, very low. They obviously should still make lifestyle changes, but now they may be on a path just related to normal degradation of function that we all hit on, but it’s unlikely to progress rapidly and progress the same way that Alzheimer’s or Parkinson’s would.
Gwen Rich (48:17):
Okay. That’s really good to know. Okay. Let’s talk about cognitive health. You’ve already mentioned lifestyle changes, diet, exercise. For instance, what comes to my mind is I think Dr. Dale Bredesen who’s done a lot of work with Alzheimer’s in his book, The End of Alzheimer’s. He talks about different things to do. Or Dr. Amen, who works with SPECT scans. All these to me are things that help with cognitive health. Can you put it in perspective of can this help when we’re thinking about LBD. What’s your thoughts on that?
Dr. Russell Lebovitz (48:59):
Sure. I think that LBD turns out to be a more complex disease in that it probably affects different regions of the brain and multiple regions of the brain. But imaging studies are useful because they tell you which parts of the brain are involved. And right now, for Alzheimer’s disease, we have certain probes that one can do testing and say which regions of the brain are involved. There are no good tests in imaging right now for LBD. While we can detect the proteins Abeta and tau, and for tau it’s still under investigation but it looks very promising, there is nothing like that right now on the horizon for synuclein. In addition, what we can detect in our test is really the growing form, the progressive form of disease, so we can see it before there is damage in the brain that you would be able to see with imaging.
Dr. Russell Lebovitz (50:10):
But altogether, the ability to image the brain, and someday we hope there will be imaging studies that work as well for synuclein. There just aren’t any today and none on the horizon. But it really is this holistic picture. Just like holistic health, we need to do a number of things for prevention. We also need to be able to look at all of the tools available to personalize a diagnosis. So a person might have misfolded prion-like synuclein. It is progressing. And if we had tools to say which regions of the brain, then that could help us. Right now our insights into which regions of the brain are involved come from symptoms. So once we suspect LBD, it is very important for the patient, for their family, for their doctor to really track symptoms. And therefore we know what the problem is, where it is, how far it has progressed. And we can even begin with those tools to measure the extent to which our preemptive prevention is helping.
Gwen Rich (51:21):
Right. We’ve talked that this test is a game changer. We’re talking about detection and the diagnosis as early as possible. I just lost my train of thought and I’m sorry, I know it had to do with, oh, I wish I could remember. I’m going to have to forget that. Sorry about that. All right. We’ve got this test. I know last time you were on, I had you talk about what can patients do, what about physicians? So for instance, I mentioned Dr. Amen who works with people who might have a traumatic brain injury, they might have something or suspect something like Alzheimer’s. Are there any doctors that are more specific that can help work with this?
Dr. Russell Lebovitz (52:10):
Yes. And again, this is a relatively newly recognized disease, but yes, doctors who treat Alzheimer’s and doctors who treat Parkinson’s both have some unique knowledge and insights. And so from our perspective, what we really need here is to get the doctors who work on Alzheimer’s and Parkinson’s, since these are both progressive neurodegenerative diseases, to share more, to think that when you see someone with signs in a memory clinic, that they might also have motor symptoms and that would not be unheard of, or in a motor disorder clinic, that one should be looking for signs of memory loss and signs of dementia. Maybe the greatest benefit we can have from these tests right now is to get doctors to think more holistically. They have been trained. Someone says, “I want to be a memory specialist. I want to treat Alzheimer’s patients. Or I want to be a Parkinson’s specialist.”
Dr. Russell Lebovitz (53:20):
But it’s no longer so easy to do that and Lewy Body disease is really the disease that breaks that model because it is both, and there are others and we will find other diseases that as they spread have cognitive and motor and neurobehavioral things like these hallucinations. That the more we learn, the more we can do. But medicine in the world and in the US has worked very well in the 20th century in silos, at least for neurodegenerative diseases. It’s probably time to break the walls of those silos and start looking at neurodegenerative diseases as a spectrum and really look carefully at the imaging tools you’re talking about. Tests like ours at the molecular level and tests for symptoms. So I think that by talking today, we can envision a time when all neurodegenerative diseases are dealt with in a more comprehensive manner and I think that will accelerate progress for all of us.
Gwen Rich (54:30):
I would agree with that. Okay. With that in mind of what you just said, do you believe… In doing the research and I just know from cognitive health, there are different diets. I think it’s called the MIND diet and the DASH diet. We have everybody who’s listening, probably freaking out, but what can we do with our cognitive health and at a young age, we really need to start. So really, do you believe in any one of these diets that really can help maybe slow things down?
Dr. Russell Lebovitz (55:02):
Yeah. Well, these are great questions. My disclaimer here is that I only know what there’ve been clear controlled studies on. And so there are MIND diets, there are people who are studying those. The data isn’t all in yet on any one of them, but the data is starting to come in on, for example, your typical Mediterranean diet, the same diet that you would use to prevent heart disease, clearly is having an impact. There is data out there, largely because we know more about that, people can go on that diet both for cardiovascular reasons, for cancer reasons, but one can also track people then for neurodegenerative diseases. And there are very long standing studies going on.
Dr. Russell Lebovitz (55:51):
So I believe that the MIND diets and variations on the Mediterranean diet may even enhance our ability to prevent. But until the data’s in, I can’t tell you specifically which protein, which mix of oils, which reduction of carbohydrates is the best. My expertise is really understanding the disease itself, but I do believe that there are changes and that we will get data in the next 5 to 10 years that will have an impact here.
Gwen Rich (56:27):
Right. I believe so. Well, we’ll have you come back and talk about maybe some things that they found in the research that people could do, but I think it’s very important. We have about a minute left. I know last time you didn’t get everything in that you wanted to. Why don’t you just give us your famous last words and what you want everybody to know.
Dr. Russell Lebovitz (56:47):
Sure. I think the takeaway for this is, again, really the big picture about neurodegenerative diseases. Lewy Body disease, Lewy Body Dementia is very important because it shows us how a disease where we believe we understand what underlies it at a molecular level can spread throughout the brain. And the idea of separating all of these diseases into something that’s pure – pure Alzheimer’s probably exists rarely now. We used to believe that it was a distinct disease, but as I mentioned, you see synuclein in 50%. So let’s start to look at these diseases as on a spectrum and understand how it affects each person and I think we can then treat it more effectively, prevent it more effectively.
Gwen Rich (57:44):
Yes, very well said. I would agree with that. Thank you so much Dr. Lebovitz for being on here, the work that you do, we know how important it is. Thanks everybody for joining us today. Remember, success is not final, failure is not fatal, but what matters is the courage to continue.